Announcement! Hiatus & Health Update

Part 1 Account Hiatus

This post serves as my announcement that I will be going on a social media break for at least the next month and potentially significantly longer.

I love the ME community and being an advocate, but I absolutely do not want to burn out or deteriorate to the point of inability to continue. While deterioration is not entirely within my control, aggressively resting is my best chance to improve my odds.

As you may have noticed, I am giving some close chronically ill friends access to my stories to continue sharing work from @mutualaidforme as well as other ME and mutual aid content they see fit. These stories will come with an announcement of who is sharing on my behalf.

Part 2 Health Update

My health has not significantly changed from when I last posted over a year ago. I remain completely bedbound, dependent on 24/7 caregiving from my friend @portia.la and husband Hugh as well as my parents when they are able tovisit and support workers. I rely on nursing care for IV fluids 5x weekly and port access once a week. My symptoms are continuous and require shielding from light and noise at all time as well a highly controlled diet and environment.

I am currently in the process of applying for NDIS. This is stressful but has the potential to alleviate caregiver burnout in my support team which is essential. I also hope to learn from the application experience to better assist others.

.

I am receiving care locally from a nurse practitioner who home visits, and via telehealth from a GP specializing in MCAS and complex chronic illness, a rheumatologist who is managing my Behcets and assisting with an experimental treatment, immunologist for assistance with MCAS, a cardiologist managing my POTS, therapist to support my mental health, a ME & POTS specialty physical therapist, and pain management specialist managing migraine, fibromyalgia and small fiber neuropathy. I also continue to consult a functional medicine and LLMD in the US who is providing experimental treatment.

.

My treatments include pacing & supportive care, immunosuppressants & MCAS medication, herbal remedies, and experimental treatments of which LDN has been the most effective. I will not explicitly list all experimental treatments but suffice to say we have investigated everything explored on this blog and much more not discussed here.

Neurologically I have stabilized significantly since recieving Humira injections biweekly. These have prevented further TIA and stroke like attacks. My other Behcets symptoms are also much improved.

.

My MCAS is improving slowly since the discontinuation of IVIG. However, it continues to remain a massive obstacle to my quality of life and to my treatment as it highly restricts my available options for food and medication.

My POTS and ME symptoms have been slowly increasing. My tolerance for upright time has declined, either due to deconditioning or progression of illness. When my MCAS is aggrevated or I enter PEM my average hr is generally over 100bpm, despite a morning rhr of aprox 75bpm. This makes hr pacing extrordinarily difficult as if I allow my hr to rise for too long it is often not possible to bring it back under 120bpm in the evenings even when completely at rest.

My most dehbilitating symptoms are migraine, muscle pain, orthostatic intollerance, nerve pain, "prickly" hives, and cognitive dysfunction. Exertion, pollen, stress, fragrance, and food are my primary triggers. Due to remaining in bed horizontal 24/7 my greatest exertional triggers are talking, eating, and cognitive labor such as social media and writing / researching. Therefore, my only real way to reduce exertion is taking a break from cognitive labor.

.

My care team is incredible and I am confident in saying I am recieving the best possible care for all my conditions. These illnesses simply have no easy answers. I feel lucky that we have slowed my decline to a minimum and that I am recieving good palliative care. I am well aware it is something many people lack.

Conclusion

This is not goodbye. I believe purpose in life is just as important as quality and quantity. Survival is insufficient. I will be fighting this fight until I am dead.

But I also aknowledge that as my health continues to decline my advocacy will see changes in form. This break is one way of calibrating those changes.

I ask that you continue to educate about this devastating disease. All of my content is freely available to share, reshare, post, copy, translate or utilize in any other way for purposes of ME advocacy or awareness.

I also ask that you follow @mutualaidforme (www.linktr.ee/mutualaidforme) and continue to support our incredible teams work. I won't be here to share it all to this account so please go follow so you do not miss it.

Finally I ask that you support eachother. I won't be around in dms or comments to help. But there are tons of resources available at www.meandmore.net/resources including links to Facebook groups where you can find support. If you see new people in my comments section give them a hand up and welcome in.

I will miss you all dearly. Friends and family are welcome to contact me via whats app or Facebook messenger (Sammy Lincroft). Instagram dms will not be checked.